Learning Disability Today
Supporting professionals working in learning disability and autism services

Families face significant barriers to keeping in touch with children with learning disabilities who live in residential care

mobile phoneFamilies can encounter significant barriers to keeping in touch with children who have learning disabilities and live in residential placements – and feel shut out if they see their child’s health and/or behaviour deteriorating, according to a new report.

The report, Keeping in Touch with Home, produced by the Challenging Behaviour Foundation and Mencap, is based on research with families whose children are in residential placements such as special schools or colleges, mental health assessment and treatment units and children’s homes. Their children (some now young adults) have complex needs, limited verbal communication and behaviour described as challenging.

The report revealed several criticisms including parents being asked to stay away when their child or young person started in a new setting, or not being kept informed, for example about changes in medication or hospital visits. Also, when families criticise a placement, some respond by limiting visits and communication with parents.

In addition, in some cases staff at residential units would apply blanket policies, meaning helpful visual technologies such as Skype could not be taken advantage of.

One father commented: “It’s always in the back of your mind when you complain… They’ve got your daughter there and you’re not there. If you are starting not to trust them, it’s a very slippery slope.”

A family carer who was involved in the report said: “When staff, for whatever reason, do not promote the importance of family and home contact, alarm bells should ring. We have experienced being placed very firmly, not just on the sidelines, but virtually out of the picture altogether. When that happens, we must ask ourselves “What is the problem? What are they trying to hide?

“Our daughter’s current support workers fully understand the importance of her keeping in touch with home, and they work to maintain that contact, calling or texting us regularly, even if just to offer reassurance. On occasions, they even come in on their days off, if they know we will be there.

“It can be no coincidence that she is so much happier, and more settled than she has been for a long time.”

The report also includes guidance on how residential settings should ensure parents can keep in touch with the thousands of children and young people with a learning disability who often live hundreds of miles from home during their childhood and adolescence in specialist residential placements.

Mencap and the Challenging Behaviour Foundation recommend that commissioners and providers use this resource so that effective support for keeping families in touch becomes normal practice rather than the exception.

The full report covers:

Learning from families. Families’ vision of the support and attitudes needed to help them keep in touch and a summary of their experiences

 Learning from local practice. Case studies from settings which show much commitment to helping their young people to keep in touch with home and keeping families well informed and involved. ‘Good practice’ checklists.

The legal framework. An overview of legal rights and duties around keeping in touch with family and involvement in decision-making, covering human rights, education, social care and mental health legislation and guidance.

James Robinson, policy lead for children and young people at Mencap and Jacqui Shurlock at the Challenging Behaviour Foundation said: “The ‘shock of separation’ can be devastating for families when a child or young person with a learning disability has to live away from home. Even the most committed of parents struggle to maintain a strong relationship with a child who has limited communication skills, living on the other side of the country.

“Family bonds matter so much to all children, especially to those who rely on their parents and siblings to understand and communicate their needs and preferences.

“Keeping in touch should be a clear focus in children and young people’s care plans, not an after-thought. Children with learning disabilities shouldn’t have to live away from home, but if they must, then their right to family life must be supported and promoted.

“We urge central government, local authorities, health commissioners and residential settings to follow the recommendations made in this report to drive much-needed improvements in practice.”

The full report can be accessed here

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